With that said, today was really tough on Clara's mama. I mentioned yesterday how I was anxious about the move and it was with good reason. Not only was it difficult to say goodbye to the wonderful people we love so dearly in the PICU, this was a big change in a lot of other ways. It's going to affect me a lot more than Clara, and this is what is best for her, so I'm going to have to make the necessary adjustments. But today was hard. For my routine-driven, control-freak, type A personality a big change like this was just the straw to break the camel's back on four weeks of pent up stress. I've held it together surprisingly well the past four weeks. I've been amazed myself at the stamina, energy, hope and peace that God has graced me with day after day. Today, I fell apart. Here are the (mostly very trivial and insignificant) changes and adjustments that let to my breakdown today: The NICU is crowded, dark, and loud. Since we share a pod with 5 other babies somebody's monitors are constantly beeping. Some of the other babies in our pod could be held by their parents and it was hard to watch them getting to snuggle while I am still waiting for my chance to hold four-week old Clara. Some of those babies were crying today too and since Clara is ventilated, we haven't heard that sweet sound yet either. The attending doctor in the NICU had a very thick accent that made it hard for me to follow what she was saying (great doctor! But I was really struggling to listen to her). They couldn't find my breast milk I brought in a few days ago... I hate wasting that stuff! They wanted to give me tiny 2oz containers to put my milk in... I'm pumping between 35-40 ounces a day - I wanted my big containers from the PICU! I have to go to a separate room far away to pump; no more bedside pumping in a private room. They wouldn't let me bring my water into the unit. We have to take off rings and watches. No cell phones are allowed. There's less space overall, but that meant that a lot of the "stuff" (like Clara's books or blankets) I've gotten used to having around was in the way. I couldn't figure out how to make the new meal vouchers work. And I couldn't find my car in the parking deck. So all of that led to a pretty big meltdown by Clara's mama. I know that none of those things are important or matter in the grand scheme, but it's all about getting shoved out of your comfort zone and having to re-learn everything from the people to the space to the rules. I'll begin that process tomorrow after (hopefully) a good night's rest and a fresh start.
I share all of this in part just to let you know that I don't always have it all together. I don't want for you to have the impression that I'm sailing through this beautifully. Yes, I am coping well. That is due in large part to the incredible support system we have, to the time we had to prepare for this in advance, and to the many prayers that are being offered on our behalf right now. God has sheltered us and protected us and He will continue to do so. But today I broke and it was hard and I felt sad and overwhelmed by everything. I think that's pretty normal. I am accepting today for what it was and looking towards tomorrow for all the good it has the potential to be.
We're thankful for Clara's stability through this adjustment. We pray for her new doctors and staff and for a smooth medical transition where the correct information is all relayed and communicated effectively. We pray that she will continue to diurese well (yesterday she was negative 208cc for the day which meant she lost 0.4kg or roughly one pound!) and that we can focus soon on the other steps to treat her pulmonary hypertension and get her home (drug and vent weanings primarily). We pray for God to continue to sustain us as He has faithfully and for the strength to make it through the next phase of her recovery.
Here are some photos of the move. I took some video too, but it takes awhile to upload, so it may be in another post....
|Goodbye, sweet PICU room!
|Green for Go! Today was moving day!
|You can see here that Clara's newborn hair is starting to all fall out. Any bets on how it comes back in? We think blond and curly.
|A quick peek at her open eye...
|Our new corner in the NICU
|The long row of baby beds
|Huge, huge baby. Let's watch her shrink!
|Her NICU pod...